Mind over Matter? Quality of life and psychological factors after spinal cord injury

Spinal cord injury (SCI) can have an impact on physical functioning, psychological well-being, social participation, and quality of life (QoL). Nevertheless, many people with SCI report a good QoL. This variation raises questions about how QoL should be conceptualized and measured and which psychological factors contribute to adaptation after SCI. This thesis aimed to improve understanding of QoL by examining the cross-cultural validity of a brief international QoL instrument and investigating psychological factors associated with QoL and the course of life satisfaction.

The first part focused on the International Spinal Cord Injury Quality of Life Basic Data Set (SCI QoL-BDS), originally comprising three items on satisfaction with life as a whole, physical health, and psychological health. Cognitive interviews were conducted with 51 people with SCI in Australia, Brazil, the Netherlands, and the United States. Participants interpreted QoL and the three items in comparable ways, supporting their cross-cultural validity. However, social relationships and participation were frequently mentioned when participants described QoL, particularly in relation to life as a whole and psychological health. A subsequent analysis linked aspects of social life reported by 39 participants to the International Classification of Functioning, Disability and Health. Family relationships, intimate relationships, and recreation and leisure were especially prominent. These findings supported adding a fourth item on satisfaction with social life to the SCI QoL-BDS. For the Dutch version, wording referring to both social relationships and participation in society was recommended.

The second part examined psychological factors associated with QoL. An updated systematic review included 66 studies published between 2010 and 2023. Better psychological QoL or mental health was consistently associated with factors including self-efficacy, resilience, hope, purpose in life, self-esteem, sense of coherence, positive affect, and internal locus of control. Conversely, neuroticism, threatening and loss-related appraisals, and dysfunctional posttraumatic cognitions were generally associated with poorer outcomes. However, the predominance of cross-sectional studies limited conclusions about directionality and causality.

Longitudinal data from 266 people with recent SCI were analysed from admission to inpatient rehabilitation until four years after discharge. Life satisfaction improved most strongly during the first weeks of rehabilitation, continued to increase until one year after discharge, and improved further between one and four years. Higher disability-management self-efficacy at admission was independently associated with a more favourable course of life satisfaction, whereas stronger threatening appraisals predicted a less favourable course. Younger age, Dutch nationality, and higher educational level were also associated with a more positive trajectory.

Overall, this thesis shows that QoL after SCI is a multidimensional and dynamic outcome encompassing physical, psychological, and social dimensions. Brief international measurement can support routine monitoring, although scores should be interpreted with awareness of the experiences underlying them. Psychological adaptation begins early and may influence well-being for years. Rehabilitation should therefore extend beyond physical recovery and include early identification of psychological vulnerabilities and strengths, support for self-efficacy, attention to how individuals appraise their injury, and opportunities to restore social relationships and participation. Supporting QoL after SCI is a shared responsibility of the rehabilitation team.